THRIVE PARENT SUPPORT AND ADVOCACY GROUP, TOGETHER WITH HI HOPES EARLY INTERVENTION PROGRAM, FORM FAMILY CENTERED EARLY INTERVENTION SOUTH AFRICA. THRIVE IS ALSO REPRESENTED ON THE GLOBAL COALITION OF PARENTS OF CHILDREN WHO ARE DEAF OR HARD OF HEARING.

Parent Stories

As parents of deaf or hard of hearing children few things are as comforting as hearing from another parent or family who has been through exactly what you are going through. Below are a few stories as told by these parents which give some insight into what the journey may feel like.

These stories are written in the words of the parents and the views and opinions expressed therein are theirs and do not necessarily reflect those of Thrive.

Namira’s story

I was 22 weeks pregnant when I went into labour with my twins. I was privileged to have had a dedicated team of doctors and nurses who did everything possible to hold off the birth and I remained in hospital under strict bedrest for the following three weeks…until our baby boy became engaged, necessitating an emergency C-section. There were two teams of surgeons and nurses in theatre that day, ready to start working on each baby as they were born.

My babies were born at 25 weeks gestation on 25 May 2012. Their birth weights were 880g and 740g proving that they are our true miracles. Although my son was not breathing on his own when he was born, he proved to be a tenacious little warrior. He was weaned off life-support after 9 days. His (really little) sister was having issues of her own. She stopped breathing on her own after 10 days in NICU because she had a hole in her heart. A second tenacious little warrior emerged, she was weaned off life support after 4 days and she then went on to not only breath on her own but over the next two months she would also drink from a bottle despite a massive hole in her heart. She underwent heart surgery at the age of 3 months, weighing a mere 2.4kg. The definition of feeling traumatised and helpless at the same time is being an NICU mummy to twins who experienced everything from lung infections, jaundice, low iron and frequent bradycardia – being twins they would take turns, as a consideration to their poor mummy and daddy’s hearts.

In August 2012, at 3 months of age, and a whopping 1.9kg our tenacious warrior # 1 came home. His little sister was released from hospital a month later, under instruction to be taken to Johannesburg immediately to undergo heart surgery. Our tenacious warrior #2 (aka Twin 2) recovered after 10 days in hospital and only Panado to ease her pain. We felt we had dodged a hundred bullets the day we had them both home.

K had failed his newborn hearing screening several times before we took him in for an ABR at 5 months of age. He was diagnosed with a profound hearing loss in both ears and he was fitted with hearing aids in both ears very shortly after his diagnosis. During that same period, he was also diagnosed with cerebral palsy – as we had noticed that he was not holding his head up and sitting up as his twin sister was. We are doing everything in our control to understand K’s diagnosis and facilitate early developmental intervention. Sacrifices had to be made, and I have changed my fulltime job to half-days. There were periods of time when we had to forget that he was a deaf child, because we just needed him to drink his milk, as he struggled to gain weight. We attended regular audiology testing and speech therapy. His sister started to sign with Makaton before she said her first words. I realised at once, that they were going to make a formidable team. While A was chatting away in her own little language, K did not verbalise at all, not even babbling. The decision to opt for a cochlear implant did not come easily – we researched, and sought advice from where ever we could. K was implanted in May 2014, and switch-on was in July 2014. It was a bit traumatising – because he cried uncontrollably, I cried as well, but these were happy tears, when later that evening when he was rolling on his bed, cooing, testing out the sound of his voice and giggling when his Dad called him from behind! You could say that he’s adapted beautifully to having a cochlear implant and his new-found access to sound, he shows recognition to sounds and expresses meaningful verbalizing. we were so excited to hear his first words, and watch more language emerging everyday. Right now our biggest challenge is keeping his hearing aid on, managing a child with limited head control, a cochlear implant and a hearing aid to boot becomes a logistical nightmare. My concern is that all the hearing aid feedback he hears through his cochlear implant disrupts his focus on learning to listen. We are lucky if his hearing aid does not dislodge after more than 15 minutes

We have a long way to go still, but the journey is full of phenomenal promise for both our tenacious little warriors.

Caylin’s story

Hi, my name is Caylin; I am a proud young mom to a very special one year old baby boy. K was born with Congenital Rubella Syndrome; as a result he has impaired vision caused by a cataract, a severe to profound hearing loss and a heart condition.

K was first diagnosed with a hearing loss when he was 8 weeks old. The news had come as a shock and none of us were prepared for it. As his mother, I felt guilty and responsible. Together with his dad, Kevin we went through a whirlwind of emotions. I have to admit that it was hard hearing that your baby is not “Perfect”. But hey, what’s perfect anyway? I cried as much as I had to, and I accepted my son for who he is, I didn’t love him any less, I loved him more.

Kevin and I have the support of each other, and we have the support of our families. We had a special baby, and it was ok, because that made us special parents.

The next question was “What do we do now?”
None of us had ever dealt with something like this before. We had no idea where to start looking for help, until K’s paediatrician called and explained everything that we needed to know. We were then referred to the Hi Hopes Programme. Shortly after I had received a call from Prof Claudine Storebeck, and after a long phone call with a lady that I have never met, it felt like this heavy load had been lifted. Within a week we had met with Claudine and she advised what services Hi Hopes offers to the families of deaf/hard of hearing children.

Claudine answered all our questions and prepared us for all the challenges that we may be faced with and what solutions we have to help K. We all had one goal in mind, and that was to do what was best for him.

Having done all our research and getting all the answers we needed, we then decided as a family that K should get the Cochlear Implant, so that he may be able to access sound and speech. Our main goal is to give K a normal happy life.

We had then met with the audiologist at JCIC (Johannesburg Cochlear implant centre) to discuss what can and will be done. She advised what the process would be for K to get a cochlear implant. All our questions had been answered and the decision has been made, and ever since that day our lives have changed. No amount of research that you do, can prepare you enough for the journey that you are about to embark on.

In order for K to be considered as a candidate for the CI, there was a certain criteria that had to be met. Such as access to sound with the help of hearing aids, Family support and commitment, speech therapy and his development had to be on par.

K was then fitted with Hearing aids, which had been rented to us. I have to admit, it was a struggle at first and continuous trouble shooting regarding the ear moulds and feedback, but we found a fit and found what suited him best, the next BIG challenge was having K keep them in. Our Motto is, “Persistence and repetition is key”. We had then also started attending speech therapy on a weekly basis. We met with the ENT as the next step of the process, which we are still currently undergoing, but we are certainly much closer than where we were.

Ever since K was diagnosed with a hearing loss, we have learnt and experienced so much within the Deaf community.

There have been many challenges that we have come across along the way such as dealing with so many professionals that have different opinions regarding what would be best for K. I have learnt that as a parent, you need to be an advocate and fight for what you believe will be best for your child. I needed to protect K and do what was best for him to have the best possible life, because of this I have become a stronger mother and a stronger woman.

We have lost friends along the way, but we have met some amazing people too. People look at us differently now, and it’s ok because we are proud of our son. We form part of the deaf community; we view life from a different perspective now.

There have been tough and trying times, and the challenges that lie ahead are unknown, but no matter what the outcome, we will be ready.

As parents, Kevin and I have the best intentions for K to live a normal life. We refuse for people or K to look at himself with a disability he is a normal kid just with a bit of extra hardware. Just like any other hearing individual, his opportunities and possibilities are endless.

Together with K, Kevin and I have grown; learning so many valuable lessons along the way has made us stronger as a couple and as parents. Yes, there are times that I still cry, and yes I still am very scared, and it’s okay. We have good days and we have bad days, but one thing is certain; the good always outweighs the bad. I firmly believe that when God gives you a special challenge like this, you need to take it on with every single bit of strength you have, and believe that God has a special plan and purpose for you. We were lucky to be chosen to fight this battle.

We are currently concluding the final preparations for the CI, the road ahead is unclear, and we are not sure what to expect, but with the help and support of our family and Hi Hopes as well as all those that have supported us through this time, we will be ready.

The best is yet to come and we look forward to the times, the lessons, new experiences and challenges we are yet to face.

God is love, and he loves me so much that I have been blessed with my son K…

Caylin

Sheree’s story

C was born into this world in 2008. I am a young mom and was only in matric at the time but I knew this little boy was sent to me to change my life and that he most definately has done in all the most wonderful and stressful ways. C was misdiagnosed at birth and was placed in high care for about a week. After finally taking baby home it grew difficult with feeding and he wasn’t drinking nearly as much as he should have been. Whilst feeding he would be dripping with sweat and breathing extremely heavily. At 3 months we went for his check up at the paediatrician, he advised that he heard a murmur in C’s heart and so then sent to see a cardiologist. It was then that we discovered he has a hole in his heart.

We flew to Johannesburg, to Sunninghill hospital where he had open heart surgery and was diagnosed with ‘ventricular septile defect’ and ‘non stenotic bicuspid aortic valve’ so in other words he only has 2 aortic valves in his heart. He was a very sickly child and at 3 years of age we had his tonsils and adenoids removed, he use to frequently stop breathing during his sleep which resulted in him being rushed to hospital twice, as his tonsils were extremely enlarged. At the age of 5 I noticed that C would cup his right ear to listen when I spoke, and if he was lying down with his right ear covered he would lift his head up and ask me to repeat what I said. I then took C to see an audiologist where we tested his hearing and found out he was 50% deaf in the right ear and 80% deaf in the left. We had to get grommets inserted to first clear away all the fluid in his ears and he is now fitted with bilateral hearing aids which he has had for about a year – they have improved his life drastically! He is profoundly deaf.

After our annual check up with the cardiologist last year he noticed that C had a shorter neck than usual and was concerned so referred us to a neurologist where they suggested C has some type of syndrome, possibly ‘noonans syndrome’. We were then put in touch with a geneticist in Johannesburg who looked over C’s reports and pictures taken by the neurologist – even though C’s features aren’t as severe he has a handful of the symptoms. We recently did a test (array) in the UK at Wessex regional genetics laboratory to test his DNA, these all came back with normal results but that is not to say nothing is wrong. Unfortunately for now there are no more tests that we can do in SA, but the geneticist strongly feels that C is on the spectrum of noonans syndrome. Along with his hearing aids we just found out he is short sighted which is a symptom of the syndrome and he will be needing glasses aswell .

So it has been a long and extremely tough journey for the 2 of us. I am a single mother and only 24 but C is the joy of my life and at the same time has brought me so much joy, many many years and some good laughs – he is an amazing young boy coping fine so far in a main stream private school with extra speech and language therapy. He still battles with children being mean and picking on him for being ‘different’…every day there seems to be a new challenge but we can only take one day at a time and trust completely in God and believe he has a plan for my amazing 6 year old. All we can do is have faith.

Bianca’s story

I’m Bianca and I’m the mother of three precious daughters, a set of twins now 5 years old and a little sister who is 2 years younger. My husband and I are both medical doctors and our journey of “knowingly” parenting deaf children began in June 2013 when we were both working at a rural South African hospital, and consequently needed, to relocate urgently for the sake of our girls. It was then when we found out that the twins are both deaf. An absolute shock, our world turned upside down, the grief of dreams lost and an overwhelming sense of guilt about their delayed diagnoses were all part of our initial experience. Then, after just coming up for air, amongst all the chaos of the move and starting amplification with hearing aids, we had our littlest tested two months later, and discovered that she too, is deaf. Three deaf daughters! At that stage, I thought that having 3 babies under 2 years old was brave, but having three small children with special needs, raised the bar on chaos!

After a steep uphill start and rather abrupt introduction into “Holland” (the Deaf world), we learned to accept our journey as a Deaf family with hearing members, and actually do even more than that…we learned to EMBRACE it. Our decisions saw us needing to learn a language very foreign to us (SASL) and we initially found ourselves having been catapulted as far out of our comfort zones as I could imagine. With incredible support and quality intervention services rendered to our family by HI HOPES free of charge, the comer of overwhelming confusion and grief was turned into a journey of hope and excitement for a future where we expect to see our 3 daughters, thrive. Seeing them reach their full potential, is not just a hope, but an expectation. I am so well aware of the reality that we will have to push, fight, challenge and change as we go forward. But knowing that I am not alone in this quest is what keeps my head up. Having realized that as their parents, we were they key to our girls’ “success” was initially daunting because of the enormity of that responsibility (and by success I mean, their truly believing that they are loved beyond measure, unlimited and created with an extraordinary purpose; nothing missing, nothing broken, and then running with that to be all they wish to be).

Now, I see this journey as the most wondrous gift that I could have been given. An opportunity to love, and hold Love by the hand each step of the way. An opportunity to push for, and expect greatness. An opportunity to see that, which can feel like such a bad thing initially, become a story of sincere hope and joy. And then, being able to use our story to evoke change for others and support and inspire parents like us – that is the most incredible honor. It’s not to say that I never have “bad” days – they are part of our journey too…but my lens is still that of HOPE.

Linda’s Story

We thought all was well with our first born child, however at 18 months his speech did not develop and so we visited a pediatrician who reassured us that some boys develop speech late. We had heard of children who started to speak at age 3, so tried not to worry. When he turned 2 years we visited an ENT who referred us to an audiologist, who confirmed that our son had a severe sensory neural hearing loss. We were devastated. It felt like the bottom dropped out of our world. The future seemed so uncertain.

Much time was spent dwelling on the cause/ reason, without finding any definite answers. We felt disbelief at both being in education and not realising there was a problem. Top of the range Hearing aids were ordered. We launched into finding out how to deal with the situation. We met parents of children with hearing aids. We looked at signing and I started implementing home programmes using the oral/aural approach with various Centres in the country and abroad. We visited a preschool in Cape Town annually, where our son attended classes and we were guided as to how best to model speech and language in our everyday routines.

Seeing deaf children who had early language intervention progress to the point of producing concerts and being able to communicate orally, gave us hope for the future. Since there was no ‘oral pre-school’ for hearing impaired children in KZN at the time, we hired and equipped a classroom, employed a trained teacher from C.T, funded by ourselves and a few other parents. Our son progressed well and he moved on to a small main stream pre-school, which provided Speech Therapy. I was always vigilant about completing homework. I must admit, I overdid all the speech and together with my teaching career, I developed vocal nodules, which had to be treated.

Primary school was another challenge. Our son’s residual hearing deteriorated to the point that he needed a cochlear implant in order to hear. This was very daunting as the operation had not yet been done in KZN. It was arranged and fortunately was a success, which was confirmed after a month of waiting for ‘switch on’. He progressed to mainstream schooling and is at present studying at university.

At the time of diagnosis I was 7 months into my 2nd pregnancy. At 5 weeks of age an ABR confirmed that our daughter’s hearing was normal, which was a huge relief. Her speech developed well. However at age 6 years we were told she too has a hearing loss and hearing aids would be necessary. Noisy environments and certain social situations are challenging for her. She attended a small remedial school and later a private mainstream school. She is very artistic and is almost finished her school career. She is considering Marketing or Fashion Designing when she leaves school.

Ruth’s Story

When our son delayed in talking after achieving all the milestones ( not even calling me Mom at age 2 and half years), we thought it’s a boy thing…boys take long to grow, talk , mature etc so we relaxed. One day I saw him move his lips without a sound! I observed him again and I saw it again. I told his dad and luckily a family friend had a practice which was fitting people with Hearing Aids. This doctor used to come to the bank I was working in and when I saw him next, I told him we needed to test my son. He agreed and gave me an appointment. We did the sleep test and to me it was not an issue at all being new parents and inexperienced. When done, he told me he wanted to see me with my husband and at this time I never thought or imagined anything bad for our son. He started by telling us how an ear works and he showed us the banana diagram and then explained it…. He recommended hearing aids as the solution. To be honest I didn’t panic, neither did my husband and we said ok if that’s the case we need to act. Not knowing where this money was coming from we tried to get it paid through medical aid but that was declined. We talked to the doctor to understand our situation suggesting that he fits the hearing aid and we pay over time. He was kind enough to agree (maybe because he was known to us ) From there he referred us to a small school where he knew kids who were hard of hearing who were being taught how to talk and were given speech therapy. My son started school at the age of 2 and a half ….he used to wear diapers to school. We had to employ an English speaking house help and made our mode of communication at home English only! We identified a speech therapist and he attended until the age of 13yrs. We always took him to mainstream schools and treated him like any other child and he competed with the hearing world. My son was never shy to talk his jargon and slurred or mispronounced obvious words…we kept on correcting him and we kept on helping him say words again. We actually started recording and writing words he had said in a day until we couldn’t any more…. I would say in conclusion 99% of this battle was won by us accepting the problem and acting immediately with the help of professionals. The moment we deny and hide our children’s disability we lose the battle and of course the child suffers for the rest of his/her life. Our son is a Miracle and every step we have seen him take has been with a lot of determination. A lot of money has been spent in hearing aids, therapy, support teachers in class and finding the right school but it’s been worth it. I would really encourage all parents like us to support your special children! I conclude….You have a special needs child because you are also Special!!

Mano’s story

29th January 1992 marks a significant day in my calendar. Born into a silent word little miss Y made her first appearance. In the background plays this song: ‘Only you can do it’. As the days and months passed by miss Y blossomed like a beautiful flower, one that was and always will be precious in the garden of life. As she developed her own uniqueness, little by little as any normal child would there was every sign of normality. She would sleep through the sounds of the vacuum cleaner as a peaceful little soul. As she went for her routine check up’s, l was told by Doctors she was normal and she would talk in her own time. Time was dragging on and by the time she was almost a year l had a growing concern as every mum would. After taking miss Y to various Specialists (one being an ENT who removed a bit of wax from her ear and smiled the situation off), l was becoming a bit restless – a little voice was telling me something was not right. l then went to an Audiologist who did an audio evoke test. She broke the news to us, your daughter is DEAF. The reaction was devastating. How, why etc ? We were then referred to different Specialists and by now we were travelling to whomever and wherever to get help. After much counselling and searching we had to make a choice. In life anything can happen, how we deal with it makes a huge difference. Hearing aids were ordered to suit miss Y’s hearing loss. We had to search for a suitable school and start the foundation stage of her education. I had to leave work to ensure miss Y was getting all the help she needed and to ensure she was treated with respect and as a normal child. Having a seven year old hearing son was a great assistance. The family learnt to Sign and communicate with miss Y. I travelled daily from Reservoir Hills to Fulton school for the Deaf. Speech therapy was offered at school and l would also take her for extra lessons. Communication was both Oral and Signed. Miss Y progressed from primary to high school where she completed her matric. She also did the Hi Hopes programme, together we mentored 4 families which was rewarding to both of us. She went on to get her Drivers licence, represented SA in the Deaf Conference in 2011, took part in Miss Deaf SA and she was a member of KZN Deaf Youth. She also taught at Fulton for a few years. She is currently studying towards her BA degree at the University of Cape Town and has embraced life to the fullest proving that disability is an ability to do more. A proud Mum-Mano!

Sammie’s story

I gave birth to the most beautiful baby. When she was 7 months old I noticed that she didn’t seem to hear nor enjoyed rattling toys. At 8 months she was diagnosed as profoundly deaf (in two different government hospitals). We got her on medical aid and 8 months later got her we went private where an ABR test was done yet again with the same result: “profound deafness” this time with ANSD . I was terrified as all the hopes and dreams I had changed instantly, they become distant and seemed impossible. I had never known anyone who was deaf. Our ENT told me about Cochlear Implants and my heart fell out of my chest once again – seeing these things sticking to people’s heads seemed so strange. The ONLY thing I knew was that I LOVED her no matter what! So I began to learn about the implants, then I met a mum with CI kid and she became my strength and my educator.

Firstly, I realised that my baby is Deaf….she always will be, at the end of the day when the aid comes off. I wanted her to be proud of It! Secondly, I had to learn SASL so that I could communicate with her. I went the extra mile – I was on time for every appointment and I learnt sign language.

Being told that A had a rare hearing disorder called ANSD was truly devastating. Even more upsetting was being told she might need lifelong help. I embraced sign language but I was terrified that she may not talk … I just wanted her to be able to tell me why she’s sad or nervous or tell me when someone has mistreated her. I wanted to know how to talk to her when she needed to confide in me. The hardest part for me was having to wait 1 year and 2 months to get fitted with CI’s at the government hospital. There is something about being a mother of a child who is on Cochlear evaluation that makes you vulnerable yet confident at the same time.

Our Speech Therapy sessions were full of praise, the therapist said that I was already doing a lot right and also that her progress was excellent in such a short time. It was such an incredibly bitter sweet moment for me. It is a very emotional path to mother a baby with CI’s. Its admitting my baby is really and truly deaf. The team of CI specialists advocate strongly for CI’s, and at that vulnerable stage they make it sounds so easy. No one really supported us after the diagnosis and helped us deal with what lay ahead. CI sounds so magical when it’s first introduced.

I was told the because of the ANSD, that my daughter would need to learn sign language. We wanted to be fluent and so looked for resources and places that offered SL classes. A was delayed in all her milestone, she couldn’t crawl until 1 year 2 months and I relied heavily on our OT team etc to help me. I was excited with every milestone reached. My little deaf girl started babbling! The CI’s meant she could hear clearly, I was very excited! As her mum, I hope she will be fluent in signed and spoken language.

Being the parent of a Deaf child is a unique journey. I have told myself that I never want A to feel isolated, the thought of it cuts through my heart. We have experienced staring and been offered all sorts of healing by people and for many people Deafness carries a stigma. A discovered the terrible twos! I can’t explain the frustration of dealing with a toddler who throws thousands of rands worth of aids on the floor (while I am shouting for her to put them back on because ‘she must wear them for at least 8 hrs daily’).

The first year of A’s diagnosis was very traumatic. Audiologists were throwing in words like ‘ANSD’, ‘Audiogram’, ‘Profound’, ‘Mild’, ‘Severe’, then we were given a time frame where we must decide to implant or not because of a child’s development stages – ‘before it’s too late to fully benefit’, ‘Good chances is before age 6’ etc etc. I was left with a feeling that to the CI team getting kids implanted is just a business. I have no regret going the CI path, I see progress daily with A. She loves to sing and dance. She’s flourishing in sign language too. It’s been an overwhelming journey!